Hey Jealousy

Tonight was a hard night for me. Greyson was ready for bed around 6:30. We got both of his bottles ready- which consists of one small bottle and one larger bottle. The smaller bottle is made up of 2oz of pediasure, thickit ( to thicken the liquid to half-nectar thickness so he does not aspirate on his food), and his seizure medication and his vitamin to protect his liver from the seizure medication. The larger bottle is 6oz of pediasure and thickit. The smaller bottle is to make sure he drinks all of his medication and the medication needs to be with food because it's hard on his tummy. Just another lovely thing about tay-sachs. The seizure medication seems to be helping with his nightly seizures but the big side effects are liver damage and it's harsh on little tummies. It's hard to put your trust in someone else saying the benefits out weight the side effects. It's that fine line. I know the vitamin is supposed to help protect his liver and we know that tay-sachs will eventually kill our son, but I don't want to give him anything that will make that happen sooner than it already will. It's something a parent should never even have to consider for their child.

Anyway- Grey finished his bottle like a champ and fell asleep in my arms pretty soon after. I laid him down around 7:20pm and went downstairs to try and get some things done before we leave for Madison. Around 8, he woke up crying so I headed up to comfort him. He let out a large burp but his stomach was pretty gurgly. I held him for a little while and laid him back down. He woke up crying again about 30 minutes later so Adam went to try and console him. Laid him back down. Then at about 9:30pm he threw up in his crib and we both ran up there to get him because we don't want him aspirating on his vomit. Thankfully Grey sleeps with his head to the side and we ended up just having to change him and his sheets. I sat down in his glider with his sweet hand holding mine and sang him our song. We sing "You Are My Sunshine" but I changed the lyrics when he was a baby. We sing- you are my sunshine, my only sunshine, you make me happy all the time, you never know dear how much I love you, you will always be my son. I took out the part about when skies are gray. I didn't want him to associate his nickname with something negative. We sat singing our song tonight and I started crying. My mind went to "one day, I won't be able to do this anymore. One day you won't be sleeping in your crib anymore."

His heavy head was cradled in my elbow, his little toes were resting on my leg, I had one of my hands on his back and the other on his tummy. He had one arm stretched out across my chest and the other resting on my hand on his stomach. I couldn't help the tears just pouring from my eyes. I try to keep it together when I'm around him- I don't know if he knows when I'm sad but I'm sure he can sense some of it. Tonight, I couldn't control it. I'm not ok. I am sad and I'm broken. I'm terrified for his surgery. I'm terrified of the days moving on to the next. I'm scared for the nights I won't have those sweet chubby fingers wrapped around mine. I honestly haven't cried like that in awhile. The medication my doctor put me on has really helped me to control my emotions better. I still have moments where I cry but I can control it better than before. I haven't had a panic attack since I started the medication - which is huge. I'm thankful to have the help to get through this. Therapy is helpful too. She's given me some tools to help with the anxiety. After Grey was asleep I quietly laid him down and snuck out of his room. Adam was downstairs watching the Bucks game and I went up and let him know I needed a hug. Thank goodness Adam is a fantastic hugger. I lost it. I'm thankful to have him and that he understands that sometimes I just need to cry it out. I don't always need someone to "fix it" or to try to fix it anyway. Sometimes, you just need to get it out.

One of the hard things to seeing our friends who have children around Greyson's age who are already talking, walking, playing, and learning. It's hard to think my son should be doing that and he never will. It's hard seeing pregnancy announcements. It's hard when people ask me if I have a child and then say "oh, I bet he's getting into everything these days!" when I tell them how old he is. It's hard when we take him out in public and people say "he looks so tired!". He can't hold his head up so his head is always laying on our shoulders. It's hard when your friends get together with their kids and they can play together and our son can't. He doesn't engage anymore really at all. He doesn't play. He doesn't hold things in his hands anymore. I tried to put him on his side today to do some side line playing and he had a seizure so I laid him back down on his back. Tay-sachs is hard. Seeing your son struggle is hard. Seeing your husband and your family break down is hard. Keeping it together yourself is hard. This is so hard. Ok, let's be honest, tay-sachs is beyond hard and to be frank, it's an asshole of a disease.

xoxo,

Kim